The ethics of researching practice

Background: this is a short assignment for a compulsory subject, Qualitative Methods in Regulation and Governance.  I’m sharing it here because I’d love to hear your thoughts about what you would want from a researcher who was observing the development of a resource, campaign, or policy initiative involving your organisation or community.  I don’t have HREC approval yet so I’m asking out of personal curiosity rather than as research.

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Reflective practice

Section One of the National Statement on Ethical Conduct in Human Research (NHMRC 2007, ch. 1) sets out values that govern research with human participants, including respect for human beings, research merit and integrity, justice and beneficence. The assignment question asks about more pragmatic issues, such as sensitivities and conflicting interests, relationships of power, and conducting research in a way that is respectful and sensitive to participants. I understand these as the critical and practical dimensions of research conduct which, if managed badly during my project, may set the scene for the more fundamental values conflicts contemplated in the National Statement.

My project aims to undertake ethnographic study of the development of two campaigns in public health. This will include interviews and observations of public health practitioners in settings that include their own stakeholders, such as funders, policy-makers, colleagues from other organisations and, potentially, members of communities they are engaging with. Working within the ethics of care approach advocated by feminist thinker Carol Gilligan, which sees participants not just as isolated autonomous subjects but as interdependent – embedded in networks of personal and professional relationships that matter to them, and vulnerable to the consequences of my own choices, both in ways that may not be easily (or at all) visible to me. This is internally consistent with my research methodology of multi-sited ethnography, which sets out to trace the associations and connections within and between multiple research sites.

The practical recommendation of Gilligan’s theory is to attend closely to the details of the context or situation in order to understand how to protect the interests of those involved in it.  A particular challenge in my project will be the presence of multiple stakeholders who have agendas, power relations and interests that may be at odds with each other. Gilligan suggests that problems of this nature “require for (their) resolution a mode of thinking that is contextual and narrative rather than formal and abstract” (Liu, 1995). Since every narrative is multivocal, this invites consultation with my participants on how to manage the reputational risks and ethical concerns that arise.

However, my project does have an agenda: to identify opportunities where campaign development can more fully consider issues of stigma and health inequities. Being ‘sensitive and respectful’ runs the risk of shading into deception, if I conceal the extent to which I am listening for the purposes of later criticism. As a critical reflexive practitioner, I have often encountered the argument that criticism is ‘unfair’. As Adrianna Kezar (2003) argues, elite interviews have transformative potential – they can make participants aware of the gap between their ideals and their practice. Respect for my own participants may not mean protecting them from this awareness (e.g. ‘being sensitive’), but rather leaving them the power to decide what to do about it. From a practical standpoint this lets me report on successful resolutions of potential concerns, and demonstrates that my change project is achievable.

Unstuck

August came early this year. Most years, I have one bad depressive episode from December to about February, and another in August.

Last year I went on holiday in December, but I didn’t really escape it.  When I am depressed I am quite a different person — more stereotypically male, actually: my emotional range is limited to numbness/detachment and shades of anger from peeved to enraged.

I came back in January needing to pack up my stuff and find a place to live in Canberra, but instead, I froze.  Eventually I got moving again, booked a trip up to check out places with a friend of a friend, but it fell through.

Finally I did what I should have done to begin with — put a call out through my aunty network — and pretty quickly found somewhere lovely.

Then I needed to pack up my apartment, where I’d been living for eight years, one cat, two long relationships, one lovely flatmate and three terrible ones. I was still feeling pretty numb but now I really needed to get shit done, so I pushed through it.

Stephanie Convery had put me onto The Life-Changing Joy of Tidying Up.  Reader, I Marie Kondo’d my house move. There’s a great line of Brené Brown’s — “some people say ‘life’s messy — love it’, I say, ‘life’s messy, clean it up, organise it, and put it into a bento box.'”

I did that.  I wound up moving thirteen boxes, of which five were kitchen stuff, and I went from a whole apartment down to a room (and an office).  And I haven’t missed anything.

But I’d also decided I didn’t want to bring any of my emotional to-do list items with me.

Some items were pretty funny.  I shipped my ex minus one’s leather gear, which he’d been too embarrassed to bring home on the plane in case his luggage got x-rayed at customs.

I filleted an incredible personal archive of notes and working documents from five jobs.  I know people experience me as hypercritical but that’s nothing compared to how I view my own work, so that felt like a fifteen year retrospective of professional failure.  At one point I was thinking about doing my PhD on my own practice as represented in that archive — thankfully, my unconscious apparently recognised that as a stupid idea and I designed a project that looks forward and seeks to understand what’s happening now.  Much easier!

I took 14 years of tax returns into H&R Block.  My delay in sorting them out had made my last partner so uncomfortable he’d started talking about ending our relationship.  Having grown up with a parent who constantly narrated our income insecurity, dealing with money ratchets my anxiety levels up to eleven.  I don’t even claim expenses back.

I bought about five different kinds of hard disk interface to move all my files off about four different computers so I wasn’t lugging around old hardware.

People scoff at Kondo’s advice to keep nothing that doesn’t spark joy when you handle it. But the body knows.  You may not be able to reason or recall why, but your emotional brain remembers and you feel it as emotion, or prickling skin, or a cold pit in your stomach.

The danger is getting overwhelmed, though.  That’s certainly what happened to me.  I had about ten days to get myself packed up before the move.  I had to keep moving, keep packing, drop a Codral Original and a strong cup of coffee, 20 hours a day for 10 days.

In March and April there was a fair bit of numbness and in May it all came unstuck.  All that unprocessed excavation in my emotional archaeology had caught up with me.

There was some physical issue as well — I’d been to the doctor and I was very anaemic.  I thought this was the return of a blood disorder I’d lived with in my twenties and early thirties and I completely froze up.  (It has turned out to be a gallbladder issue.)

Getting unstuck again took about two months.  Apart from getting every pathology test under the sun, I got a mental health care plan from my GP to access counselling via the Better Access program.  That turned out to be a waste of time; the gap fee I was quoted for assessment, in line with the Australian Psychological Society’s recommended fee schedule, amounts to a quarter of my fortnightly income.

Things that helped:  my supervisor being supportive and super-chill about it;  lots of movies with Zoe and Owy;  finding a new meditation group at, ironically, the temple just across the road from my house;  learning how to get protein without eating meat;  applying for funding for field work got me excited again about the project I’d designed;  blogging here about fairly simple stuff helped to get the words flowing again.

I’m writing this because I talk all the time with friends living with the same and more serious issues and I want you/us to know: we’re not uncommon, unusual, or alone.

‘Pissed’ at Grindr

Mathew Rodriguez from Mic.com has written an excellent piece on the concerns I and others have raised about Grindr considering an ‘HIV filter’ on its app.

grindr people are pissed

I love Mic because they write about crunchy social justice issues with rigour and verve.  Also, because their house style permits a headline describing me as ‘pissed’. ^_^

What’s so great about this piece is that Mathew understands and demonstrates that stigma is not just about hurt feelings — it directly affects the success of prevention.

Racialising disease: new syphilis resource in Victoria

Photos have surfaced of a new syphilis resource in Victoria and it is ~problematique.~

Update: activist and TIM co-founder Nic Holas followed up with MSHC and they advised the resource was produced in 2013 and ‘pulled’ after complaints.  Copies of the resource pictured below were picked up this morning, so it seems they are still distributing it.

Syphilis resource from Victoria via Bryan Andy pers comm 12 July 2016

Hat tip and thanks to Bryan Andy for posting this and sharing his critique.

Let me describe the image: there is a phone displaying what looks like a dating app with tiled face pictures. Five of the tiles display smiling Anglo, Latino or Mediterranean faces. All of the remaining tiles are taken up by a photo of a Black or Asian man, tinted deep red, with the username ‘SYPHILIS’.

Beside the phone is a speech bubble saying ‘OMG he’s everywhere! SYPHILIS.’ Below it there’s some text providing facts about syphilis transmission and a fine print warning ‘Brochure contains explicit photographs of male genitalia’.

I have so many questions. Who produced this?  Was there a reference group? Which community organisations were consulted? Was it focus tested?

The explicit photos of STI infection make me think that it’s probably from the Melbourne Sexual Health Centre, because they love that shit.  If you’re doing their electronic admission questionnaire and you say you’re not sure if you have symptoms, they will show you page after page of diseased genitalia.  I took a friend there for his first ever HIV test and he nearly walked out of the clinic in horror.

The other give-away is the creative concept is so hackneyed: iPhones and app screens and ‘OMG’ are so last decade.  It reads like a Boomer attempting to be ‘hip ‘n’ happenin’.

I asked about a reference group and focus testing because these are both opportunities to challenge groupthink.  You might have a clinician who’s also a gay man, but a community educator has a much better understanding of how other gay men are different from him. 

Similarly, when we focus test, we’re inviting a discussion among a sample of participants as diverse as we’re able to recruit, in order to get a sense of the range of different possible interpretations of the stimulus material.

But this wouldn’t have made it to focus testing on any reference group I was part of.

It’s always good to invite a marketer or designer or photographer or illustrator or cultural studies researcher onto your reference group.  That’s because we understand that images have plural connotations.  They don’t always signify in the way we might intend them to.

We draw on a mental library of these connotations — a symbolic history of the culture that informs how audience members might interpret the images and therefore the message.

Accordingly, I ‘read’ the images above and their accidental references in these ways:

  • If audience members view the man pictured as Asian and we’ve overlaid his face with a red tint, the unconscious associations that might be triggered include the visual imagery used in propaganda stoking WWII fears of Asian invasion of Australia.
  • If the man pictured is viewed as black, then we’ve got an accidental reference to Tuskegee, where clinicians left African American men with syphilis untreated for decades in order to study the natural progression of the illness. We’re also then referring to racial stereotypes of black men as hypersexual spreaders of disease, as seen in the moral panic about bisexual black men ‘on the down low’ last decade.

As an American colleague recently explained to me, American social science maintains a distinction between two competing systems of differentiation: race and ethnicity.  I mention America because I’m pretty confident this image was constructed using stock photography or a photo-composite taken from America.

In the image, the uninfected people are shown as Anglo or light-skinned ‘ethnic’ while the guy who poses a threat to them — and by extension the audience member — is depicted as ‘racially other’.

Racist discourse often draws analogies between immigration and plague, subjugated and racialised others as pestilence, and this imagery unwittingly reproduces that analogy.

I understand stigma, with Parker & Aggleton (2003), as the production of difference in the service of power — in ways that normalise unjust social orderings.

The pictured resource exemplifies this.  It visualises an association between disease, contagion and non-white race. In other words, it marks out non-white people as differing from white people by having increased prevalence of disease.

It would have been trivially easy to use the highlight colour to symbolise the disease and overlay it on multiple, racially diverse faces.  In other words, either the problem was not spotted or a choice was made to ignore it.  (See update at the top of this post.)

The end of AIDS?

My supervisor messaged me: “ABC news right now – the end of AIDS as a public health issue.”  Fairfax was reporting it too:

AIDS epidemic ‘over’ in Australia, say peak bodies

Australia’s peak AIDS organisations and scientists have announced an end to the AIDS epidemic, as the country joins the few nations in the world to have beaten the syndrome.

The number of annual cases of AIDS diagnoses is now so small, top researchers and the Australian Federation of AIDS Organisations [AFAO] have declared the public health issue to be over.  (Saimi Jeong, The Age 10 July 2016)

In blog posts and feature articles for some time now, I’ve been arguing that media framings, policy-making and popular understandings of HIV have lagged behind reality, holding onto notions of the ‘AIDS crisis’ and HIV as a deadly disease.

These ‘zombie notions’ impede sensible policy-making around prevention, such as the removal of outdated HIV-specific laws, and public funding for pre-exposure prophylaxis — medication that protects HIV-negative people from infection during condomless sex.

lazarus

Gary Dowsett first conceptualised ‘post-AIDS’ thinking among gay men in 1996.  In 2004, at a plenary session of the HHARD and HIV Educators’ conferences, I described myself as ‘pre-AIDS’ — born in 1981, coming out to myself in the mid-90s, the ‘AIDS crisis’ was over in the gay community before I ever joined it, and I’d had to reconstruct an understanding of what it had meant for the people around me.  More recently, cultural studies scholar and critic Dion Kagan wrote his PhD on ‘post-crisis’ meaning-making around HIV, along with a stellar series of columns exploring this theme in The Lifted Brow.

I understand the messaging from AFAO and celebrity scientist Prof Sharon Lewin in this context.  At first I wondered what it was about.  I think there are three things going on:

  • The number of people dying from AIDS, rather than dying with HIV, is now so low it violates statistical conventions against reporting cell sizes under 5.
  • AFAO might have wanted to shift the media and policy narrative and ‘claim a win’ to count against what’s starting to look like the inevitable failure of ‘Ending HIV‘.
  • Australia wanted an ‘announceable’ going into the AIDS2016 conference in Durban.

(Update: AFAO’s CEO Darryl O’Donnell did a great job challenging outdated narratives on ABC Radio National Breakfast this morning — you can listen to the interview here.)

A number of people have expressed concern to me that this announcement obscures the reality of ongoing, smaller AIDS crises in particular groups, including migrants and refugees, especially those who lack access to Medicare, and Aboriginal communities.

Since 1996 we no longer focus on deaths from AIDS nor even AIDS diagnoses — early diagnosis and treatment are the ballgame. People with late diagnosis, defined as a t-cell count below 350 per millilitre of blood, have elevated lifetime risk of serious illness, including cardiovascular events like heart attack, even after they start on treatment.

Update:  The figure below shows the heterosexual communities in which late diagnosis is common. Spoiler alert — it’s all of them.  And the personal impact of infection will be far greater for people are living in communities where outdated notions of HIV still predominate; where strategies to tackle stigma and discrimination are nascent or non-existent; and that in many cases haven’t yet developed cultures of care to support treatment and wellbeing.

Screenshot 2016-07-11 08.05.47

Source: Kirby Institute, Annual Surveillance Report 2015 p51 (pdf)

In other health issues, such as cancer screening, the identification of lower rates of screening in specific communities compared to the Victorian population average has been used to target them for additional funding and recruitment initiatives.  But the danger is always that small clusters get swept under the carpet, protected from identifiability by that convention against reporting cell sizes under 5.

My concern about this messaging is that it depends on policy-makers understanding that AIDS is not a journalistic synonym for HIV.

If they don’t, this message will look like a green light to ‘mainstream HIV’ — ditching peer based services and funding hospitals, nurses, social workers and MPH grads to ‘mop up’.  That would be more expensive than community-based services, but it would restore what the health system views as the natural way of doing things — top down, expert-led.

Bernard Gardiner, a PhD scholar working on a qualitative longitudinal study of aging, place and social isolation among people living with HIV in Queensland, and a respected elder of the Victorian gay community response to AIDS, puts it this way:

I think this is careless. This takes the pressure off Public Health officers working for Government, who see psycho-social support services for long-term survivors as unnecessary ‘hand-holding’ that Gov should not fund. It also disguises the reality that some long-term survivors struggle for quality of life with depression, multiple co-morbidities, cognitive issues, cancers/heart/renal issues, and poverty, and feel somewhat abandoned by the biomedical 90/90/90 focus.

Once upon a time a shift like this would have been thoroughly debated among the AFAO membership and communicated to affected communities via community media.  This would have provided an opportunity to prepare for the secondary messaging that will be necessary to make sure this message doesn’t backfire.  We live in interesting times.

Digital quarantine? Grindr considers HIV filter

A colleague from UMontréal, David Myles, posted these Grindr screencaps in a group for researchers interested in hook-up apps.  Turns out Grindr is surveying at least some of its members to find out how they feel about filtering other members by HIV status.

For a long time it has been possible on sites like BarebackRT and Manhunt to search by HIV status — for example, to facilitate serosorting as a way of partially reducing the risk of HIV transmission during unprotected sex, before PrEP came along.  Users could also save searches, so if they ticked every box except HIV-positive, they could construct their own de facto anti-HIV filters.

But it is a completely different ballgame for the makers of an app to build in a feature that effectively facilitates digital quarantine of people living with HIV.

It signals that HIV stigma is normal and rational.

Now, it could be said that people who use the filter are effectively isolating themselves from people living with HIV — reducing the likelihood of encounters where stigma is enacted in the form of verbal abuse and discrimination.  (Here’s one I prepared earlier.)

But Grindr filters, to the best of my knowledge, only stop matching profiles from appearing on the ‘grid’ — the display cabinet or catalogue of other users.

Would the HIV filter work differently, making that user invisible to others whose HIV status didn’t match their preferences — more like an automatic block function?

If it did, and enough HIV-negative people used it, it really would constitute a form of digital quarantine that leaves people with HIV outcast and invisible.

If it didn’t, it might set the scene for even more stigmatising encounters, fuelled by filter users’ surprise (and probably anger) that someone with HIV had contacted them.

Alternatively, they might assume that everyone who contacted them was HIV-negative, and the problematic implications of that assumption are well-known.

Grindr needs to cut this out.  Right now.  We are living in an era of effective prevention medication.  We should not be reinforcing categories that are used in less effective strategies for prevention.

‘Ending AIDS in a generation’

I’ve been openly critical of the rhetoric in global HIV/AIDS policy around ‘ending HIV’.  For instance, at the MSM Global Forum pre-conference in Melbourne before AIDS2014, when US global AIDS ambassador Debbie Birx exhorted queer and trans people to ‘run a little harder’ towards the goal of ending AIDS in a generation.  This would be a little easier if so many queer and trans people around the world weren’t also running for their lives.

For many AIDS activists, the timing of the Orlando massacre was particularly painful, coming hard on the heels of the UN High Level Meeting on AIDS, where ‘key populations’ of queer and trans people, people who inject drugs and sex workers were actively excluded from deliberations and barely mentioned in the final document.

Laurel Sprague noted one paragraph in particular as a masterpiece of international policy double-speak.  I’ve highlighted the competing voices in different colours:

Reaffirm the sovereign rights of Member States, as enshrined in the Charter of the United Nations, and the need for all countries to implement the commitments and pledges in the present Declaration consistent with national laws, national development priorities and international human rights;

So the ‘run a little bit harder’ rhetoric shifts responsibility away from states and onto communities, making it sound like they’re not working hard enough to end HIV.

There is another problem with the ‘ending HIV’ rhetoric, as seen in this quote from an interview with Bill Gates, one of the largest funders of global HIV prevention:

There’s a few things where you get a slogan like “AIDS-free generation.” … I wish that were more likely. Truthfully, because we don’t have a vaccine, and the prophylactic tools, the compliance of those things has been very poor. We actually run a risk that the next generation will have more AIDS than previous generations.

It’s a story with mostly positive elements, but if you say simplistically we are on the path toward an AIDS-free generation, no, we’re not. We need more R&D, more tools. And if you’re not careful, if you overpromise, you do get this fatigue, and then, even when you still need the resources, people don’t come in.

The experience of the global effort to eradicate polio tells us that even if a preventative vaccine for HIV were discovered tomorrow, it would still take a multi-generation effort to eradicate HIV.  Consistent with Bruce Link and Jo Phelan’s fundamental causes of disease (FCD) model, we’d expect to see rich countries achieve pretty high vaccine coverage early on, and poorer countries (and disadvantaged social groups) taking a lot longer.  The crux of the FCD model is lack of access to what Link and Phelan call flexible resources like money, knowledge, literacy, and social status.

But I want to acknowledge that – at least in Australia – the ‘ending HIV’ rhetoric was in large part an intervention by canny policy entrepreneurs who sensed the winds of change in the early days of the global financial crisis, and knew to anticipate the damage that could be caused by social conservatives having a ‘good crisis’, using austerity discourse to justify huge cuts to social services and welfare.  The extended election campaign we’re having in Australia has created space for unions and social policy researchers and social services peak bodies to tell the story of the billion dollars in cuts under Abbott.

Although the HIV sector is by no means unscathed, with genuinely community-based peaks like Anwernekenhe National HIV Alliance for Aboriginal and Torres Strait Islander peoples getting completely de-funded, and the Australian Federation of AIDS Organisations losing funding for its education program to two of its own member orgs (!), my sense is that things could have been so much worse.

This is a hard one to prove — the counterfactual is a hypothetical what could have been.  But having Australia’s largest state, New South Wales, commit to an Ending HIV strategy, campaign, and program of rapid testing services and early treatment, helped keep HIV prevention on the policy agenda.  So while the science of the ‘ending HIV’ claim is questionable, that was never really the point.